What it’s really like to live with Type 1 Diabetes

by | Feb 7, 2021 | Community, Voices

Prior to my type 1 diabetes diagnosis, when I was 6 years old, I was a healthy, happy child. I went to dance class, enjoyed school and was just like any other child. However, I started experiencing unexplained weight loss, tiredness and nausea. I constantly felt thirsty, and a change in behaviour, causing me to become easily upset and irritated.

I was diagnosed with diabetes, and my life changed forever.

Living with an invisible illness, most people do not realise the effect it has on my life. Since my diagnosis, I have lost an estimated 2128 hours of sleep (but potentially more than that), had at least 19,910 finger prick tests, 10,808 insulin needle injections, and within the last 6 years, had at least 703 insulin pump site changes.

Luckily, my diabetes team at James Cook University- who have constantly provided loads of support and help- were able to provide me with an Omnipod insulin pump when I was 11, and a Dexcom continuous glucose monitor when I was 14, which has massively improved my Diabetes control and decreased the amount of insulin injections and finger pricks needed.

An example alert from a CGM (Continuous Glucose Monitoring Machine) on a smartphone.

I have also experienced stigma, stereotypes and discrimination with my illness, both from adults and people my own age. The common insensitive “diabetes jokes,” as well as the ignorant questions, such as people asking me how I lost the weight  and if used to be fat. They are part of the reason why there needs to be more education on diabetes.

Many adults have mistaken my insulin pump beeping for me being on my phone, as well as some suggesting that my glucose meter beeping was me “attention seeking,” or trying to “glamorise diabetes.” With one teacher (although the majority of schools and teachers are supportive) even going as far as attempting to ban me from wearing my CGM which alerts me when my blood sugars go low (hypo) or high (hyper).

If this had been successful, I would have had to go back to taking multiple finger pricks a day, which would have been dangerous to my health as I would have been unaware if I had gone into a hypo. However, I feel that all these people don’t realise the effects of what they were saying and doing.

If they had been more aware and educated themselves on diabetes and invisible illnesses, many would have gone about things differently. Experiences like this are not uncommon for people with an invisible illness. People think that because they are not the ones feeling it, or because they can’t see it, that means it’s not important or they think that it’s not a big deal. They don’t realise the significance and the impact of what they say and do.

Despite the injections and insulin pumps, the hypos and the hypers, the discrimination and the stereotypes, it hasn’t been an awful experience. I have had some supportive teachers. Supportive family and friends who have been willing to learn about diabetes and help me.

CJ is now studying for her A-levels, and receives support from JCUH and Type 1 Families.

It hasn’t been easy, but my diabetes hasn’t stopped me from doing the things I’ve wanted to do – I’ve continued with my dancing, and been able to take part in dance exams and shows. I started my A-levels this year, and haven’t been stopped from doing any outside of school activities. I’ve met, and become close friends, with many other diabetics my age, who I would have otherwise never have gotten the chance to know.

I’ve received support from a local charity/support group called Type 1 families, which provides support, events and opportunities to meet other diabetics for people in North Yorkshire and Cleveland. Over the years I’ve been on residential trips organised by the paediatrics diabetes team.


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